March 16, 2019 – Parkinson’s Weekly Update

This is a recap of the most interesting news and discussions related to Parkinson’s Disease this past week.

A couple of friends commented to me that last week’s newsletter was a bit depressing, particularly the lead story. So this week, we’ve added extra snark factor to our topic introductions…and our lead story is a fluff piece that serves no purpose other than to make you laugh. The lead story arrives courtesy of a TV comedy writer who, after his PD diagnosis, decided to give stand-up comedy a go. Also featured this week:

  • a deep dive into the decidedly low tech sorting hat test by which neurologists determine if you’re a Gryffindor, Ravenclaw, Hufflepuff, Slytherin or Parkinson;
  • more on those Tasmanian devils wearing red light buckets on their heads for Parkinson’s;
  • stabilizing spoons that we don’t need because soup and cereal are overrated;
  • a proposal to open a casino to leverage dopamine agonist fueled gambling addiction as a way of funding PD research;
  • wicked beards and the unexpected placebo effect of volunteerism;
  • a silly hospital name in India;
  • why breakfast might not be the most important meal of the day;
  • and a multicolored assortment of research newsbriefs with elastic waistbands.
  1. Paul Mayhew-Archer is a UK comedy writer best known for his work on “The Vicar of Dibley” and “Mrs Brown’s Boys”. Since his diagnosis with Parkinson’s Disease in 2011, he’s been looking at the funny side of life with Parkinson’s, performing stand-up comedy, and is currently touring the UK in his one man show, “Incurable Optimist”. Enjoy a few of his humorous takes on PD here: https://parkinson.fit/forums/topic/comedy-writer-paul-mayhew-archer-looks-at-the-funny-side-of-life-with-pd/
  2. The Science of Parkinson’s (SoP) website has an insightful article on the Unified Parkinson’s Disease Rating Scale (or UPDRS), which you may remember as the silly test in which you were asked to touch your nose, pinch your fingers together, and walk around the room, before the neurologist concluded that you have Parkinson’s Disease.  UPDRS is how PD is clinically diagnosed and how disease severity is measured. SoP does their usual bang up job of explaining the history of the test, known limitations, and possible future direction. (We think a Hogwarts style sorting hat is what researchers should aim for.) https://scienceofparkinsons.com/2019/03/06/updrs/
  3. Research Newsbrief: The Parkinson’s Foundation sees hope in a small study in Sweden, looking at a new drug IRL790 that shows promise for reducing levodopa induced dyskinesia, which is a significant quality of life concern for longtime Parkinson’s sufferers who experience involuntary rapid jerking and twisting, or slow and extended muscle spasms. More details here: https://parkinson.org/blog/science-news/New-Drug-Shows-Promise-for-Levodopa-Induced-Dyskinesia
  4. It seems that people with Parkinson’s know a good fashion trend when they see one. The story about the group of Parkinson’s patients in Tasmania (Australia) wearing red light buckets on their head to help with Parkinson’s symptoms has consistently been one of the most sought after stories on our website in recent weeks. The treatment is known as photobiomodulation. It is experimental and unproven. For those who are interested, we’ve tracked down the bucket hat creator, who has released DIY instructions so that you can build your own red light bucket hat. More details and the intriguing backstory here: https://parkinson.fit/forums/topic/wearing-a-red-light-bucket-on-your-head-for-parkinsons/#post-104296
  5. I’m not in the market for a stabilizing spoon yet, but I found this round up and review of adaptive tableware interesting: https://heavy.com/health/2019/03/stabilizing-spoon/
  6. Research Newsbrief: While the phase 2 clinical trial of the repurposed cancer/leukemia drug nilotinib continues at Georgetown University, researchers have released a paper describing how they believe the drug works in fighting Parkinson’s. In a press release, the study’s senior author, Charbel Moussa says, “We detect the drug in the brain producing multiple effects, including improving dopamine metabolism — reducing both inflammation and toxic alpha-synuclein. This is unprecedented for any drug now used to treat Parkinson’s disease.” The trial still has another year to run, so we have awhile left to wait to find out if patients in the trial see meaningful results. More details here: https://www.eurekalert.org/pub_releases/2019-03/gumc-rdh030819.php
  7. Recently, we sarcastically noted that dopamine agonists (such as mirapex/pramipexole and requip/ropinirole) are a category of drugs that have a surprising efficacy in destroying lives. A 5 year study found that 46% of PD patients that were prescribed a dopamine agonist developed impulse control disorders, including gambling addiction, hypersexuality and porn addiction. After reading a case study about a woman with PD who gambled away $1 million over the course of 2-1/2 years after being prescribed pramipexole, we could not help but wonder if we should build a casino to raise funds for Parkinson’s Disease research. At least in our casino, these funds could have been put to good use! We jest, but only to increase awareness of this problem. https://parkinson.fit/forums/topic/parkinsons-disease-casino/
  8. There is an interesting argument for how the action of volunteering and fund raising for PD research not only helps enable research that will benefit Parkinson’s patients in the future, but can also improve your Parkinson’s symptoms today. We call this the unexpected placebo effect of volunteerism. The essay is an exploration of dopamine, placebo effect, and the psychological side of dopamine. Along the way, we learn about anticipation, delayed gratification, and meet a brilliant neuroscientist with a wicked beard: https://parkinson.fit/forums/topic/the-unexpected-placebo-effect-of-pd-volunteerism/
  9. The Parkinson’s community in India was in a tizzy over a video posted on Facebook by Nanavati Super Specialty Hospital (yes, that is the hospital’s real name)  that showed “miracle” results of an apomorphine infusion on a 50-year old patient with advanced Parkinson’s Disease. After complaints from the Movement Disorders Society of India, the hospital removed the video. There’s no miracle, and this is a sad reminder  that many Parkinson’s sufferers are under medicated. https://parkinson.fit/forums/topic/mumbai-hospital-viral-video-gives-impression-of-miracle-drug-for-parkinsons/
  10. Research Newsbrief: Researchers at Iowa State University have determined the biological process through which too much exposure to the metal manganese causes Parkinson’s symptoms, triggered by the way that manganese binds to the alpha-synuclein protein. More info: https://www.news.iastate.edu/news/2019/03/12/manganeseparkinsons
  11. This editor decided to begin an experiment with intermittent fasting (specifically time restricted feeding) to see if it might personally help Parkinson’s symptoms. It goes against almost everything I’ve ever been taught about nutrition. There are many reasons why this may not be a good idea, but some people might be curious why someone who appears to have at least reasonable intelligence would consider such a crazy idea: https://parkinson.fit/forums/topic/why-i-am-experimenting-with-intermittent-fasting-to-see-if-it-helps-parkinsons/
  12. Research Newsbrief: Scientists at Imperial College in London believe they are getting closer to understand how Deep Brain Stimulation (DBS) works to improve Parkinson’s symptoms. Yes, you read that right, DBS has been around for 20-some years, “But despite the success of the treatment, we still don’t know exactly how delivering electric pulses to brain cells creates these beneficial effects,” according to the senior author of the study, who continues, “Our results, despite being at an early-stage, suggest the electric pulses boost batteries in the brain cells. This potentially opens avenues for exploring how to replicate this cell power-up with non-surgical treatments, without the need for implanting electrodes in the brain.” More insight here: https://eurekalert.org/pub_releases/2019-03/icl-ptd031119.php

Previous Week – March 9, 2019

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